MPIP: Melanoma Patients Information Page

The MPIP is the oldest and largest community of people affected by melanoma hosted through the Melanoma Research Foundation. It is designed to provide support and information to caregivers, patients, family and friends. Once you have been touched by melanoma—either as a patient or as a family member or friend of a patient—you become part of a community. It is not a community anyone joins willingly. But if you must be part of this group, you will find no better place to find the tools you need in your journey with this cancer, and the friends who can make that journey more bearable.

The information on the bulletin board is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

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Aiden's picture
Replies 1
Last reply 4/19/2015 - 5:24pm
Replies by: kathycmc

Hi everyone!

Here is my story.

I am 35 white male. 

In january 2015 I went to visit my new primary doctor.  I was wearing simple black tshirt and just like that my primary doctor said, " You do have lots of moles on you, you should see a dermatologist. We white people tend to have skin cancer"  Well, that  wasn't my purpose of that visit. Ok.

Anyway, after that visit I schedule a visit to the dermalogist. 

End of January 2015 I am in the office seeing dermatologist. After quick conversation, she told me to undress for the full body skin check. Ok 

She started examining my skin walking around. Suddenly she stopped and said " you do have suspicious mole on your back. I have to do the biopsy of it"  I said are you serious?  Doctor said yes, you have 50/50 to have skin cancer. I was in shock. 

Biopsy done. I am waiting 10 days to find out my final results. Very difficult time for me. 

Finally on Friday afternoon my dermatologist called and said. " I have a good and bad news. Bad news is it's Melanoma, Melanoma in Situ found in the mole, good news it's very early. It's just on the surface of the skin, and didn't even break the first layer of the skin" 

What now, I asked? She said " I don't want you to worry about it. It's very early and the prognosis are great in your case. You need to have a surgery to be done soon. After that you will be under regular check ups" Ok

Mid of February 2015 I had my surgery done at University of Chicago Hospital.  After my surgery I had my final results. All margins are clear. No additional treatment. Continue fallow up with dermatologist. 

Eventhough, my case was cought early, I can't find a peace. I think about that everyday, and trying to stay positive. Soon I am going to see my dermatologist for the first check up. 

How to live with the thought of being diagnosed with skin cancer?

Thank you all for reading my story  

Aiden. 

 

 

 

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lesli's picture
Replies 1
Last reply 4/19/2015 - 9:00am
Replies by: arthurjedi007

Hi All,  my scans at 7.5 weeks on Keytruda are showing universal growth in all lesioins.  In all hope, could it be inflammation?  How long to proceed treatment before considering another option (there is still a question about what that is)?  That is, what is the definition of "failed" on Keytruda?

Thanks in advance. Leslie

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jennifer83's picture
Replies 2
Last reply 4/19/2015 - 10:33am
Replies by: MattF, Janner

Hi there,

My surgeon told me I was cured of my melonoma, originally diagnosed in November 2014... stage 1B - middle right side of my back... WLE and SNLB (came back negative).  I've been going to my three month check ups and have had a few more biopsies that have came back negative.  

Just this last week, my WLE scar has developed quite a lump and is super itchy.  The scar is still a deep pink/purple and has always had a textured feeling.  The color hasn't changed, but you can see the lump area has expanded the color, marble size.  

Of course, I'm going to make an appt with my derm first thing on Monday - but I was just wondering about thoughts/ looking for support/ seeking experiences.  I'm a very positive person and am banking on this just being scar tissue that may be inflammed.  Has nyone here had a similar experience?  What was your outcome?  

Thanks for listening!
 

Jennifer

Jennifer

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chowmene's picture
Replies 1
Last reply 4/18/2015 - 2:21pm
Replies by: Janner

can or is pain associated with mole growth?

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Jen P's picture
Replies 5
Last reply 4/19/2015 - 7:38pm

Has anyone here with Stage IV and high tumor burden seen positive results with Keytruda? Thanks.

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MixtaJones's picture
Replies 3
Last reply 4/18/2015 - 10:02am
Replies by: Janner, MixtaJones

Hey all,

 

I just got a call from my derm talling me that a mole they just did a shave biopsy on came back as a Superficial Spreading  Melanoma. Clark level 3. This mole was about 8 inches from my "primary" site on my back which was removed about 2 years ago. I have already had 22 lymph nodes removed, Radiation, and Yervoy to treat remaining tumors. The mole they removed has been there for years but every doctor has said it is nothing to worry about until my derm agreed to take it off.

Is this a second "primary" site? Or is it a sign of the first site spreading? I don't see my Onc till Wednesday ans I am a little freaked out. Has anyone had more then 1 melignant mole?

 

 

Philippians 4:13 "I can do all things through Christ who strenghtens me"

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Ginger8888's picture
Replies 5
Last reply 4/19/2015 - 7:07pm

Went and got my scan results yesterday and i am still NED and have been since Aug 13th, thank you Yervoy!!! One more good 3 month scan and i get moved to 4 months..

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braunerk's picture
Replies 1
Last reply 4/18/2015 - 9:34am
Replies by: Ed Williams

Is there any difference with different therapies with having 
Acral version of Melanoma I have Acral and have not responded to Ippi or it seems Keytruda. Don't know where to go next for treatment. My doc is thinking doing  Ippi again but not sure. Any suggestions would be helpful 

 

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dentholla's picture
Replies 1
Last reply 4/18/2015 - 12:29am
Replies by: Janner

***Once again - this forum is a life saver***  For each of you reading my posts and responding I THANK YOU!!!  This is a team effort and we are all our own advocates in winning this race!

The results from my husband's WLE and SNB (node positive) show that there is no residual melanoma in-situ but does say residual malignant melanoma, 8mm?????

History is 1st path (shave biopsy) estimated >.8mm with no clear margins

WLE path shows the above mentioned residual comments and confirmed depth at 1.5mm.  All margins are negative for melanoma (closest margin 1MM (MEDIAL).  With lymphoascular invasion present I am wondering if we do a 2nd WLE because of the closest margin or are we okay?

We are scheduling a PET for next week and God willing moving forward with a modified neck dissection.  What do the residual malignant melanoma comments mean?  I can't find much information about it.

Would appreciate any insite on this if you have the time.

 

Not anonymous - sorry for the multiple posts :-)

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***Once again - this forum is a life saver***  For each of you reading my posts and responding I THANK YOU!!!  This is a team effort and we are all our own advocates in winning this race!

The results from my husband's WLE and SNB (node positive) show that there is no residual melanoma in-situ but does say residual malignant melanoma, 8mm?????

History is 1st path (shave biopsy) estimated >.8mm with no clear margins

WLE path shows the above mentioned residual comments and confirmed depth at 1.5mm.  All margins are negative for melanoma (closest margin 1MM (MEDIAL).  With lymphoascular invasion present I am wondering if we do a 2nd WLE because of the closest margin or are we okay?

We are scheduling a PET for next week and God willing moving forward with a modified neck dissection.  What do the residual malignant melanoma comments mean?  I can't find much information about it.

Would appreciate any insite on this if you have the time.

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Hstevens0072's picture
Replies 3
Last reply 4/18/2015 - 9:42pm
Replies by: _Paul_, Hstevens0072

I've been on the MK 3475 clinical trial for almost two years.  It's been pretty smooth sailing, joint pain and fatigue were the worst side effects up to now.

All of a sudden my blood sugar has risen, today's fasting was 346 and I've been on Metformin for six weeks and have been watching my diet.

has anyone else experienced this?  I'm very worried they will take me off the study.

thanks,

Holly

"The key is don't go to the funeral until the day of the funeral" ~ Valerie Harper

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jahendry12's picture
Replies 3
Last reply 4/16/2015 - 9:18pm
Replies by: dvd, jahendry12, Bubbles

I wanted to post a question that I have not been able to get answered via internet searches.

My husband is Stage IV and NED for over 2 years now :)  I know that we will be having scans for the rest of his life, but if he remains NED for > 5 years, would he then be considered a lower stage or is it once Stage IV, always stage IV?

Thanks for any input.

 

Julie

 

 

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Teej's picture
Replies 2
Last reply 4/16/2015 - 3:51pm
Replies by: momof4boys, Janner

Hi everyone,

I had WLE on my scalp for a 1.4 mm (Stage Ib) melanoma back in November. There were no cancer cells in any of the margins, and nothing in the lymph nodes. After about a month, a black spot started to appear within the scar tissue from the excision site. It was removed and biopsied by the dermatologist and declared "residual melanoma". My surgeon and I don't quite buy it and think it was most likely a satellite. I had a PET scan done and everything was fine as both he and I suspected. If things are going on at the moment, it's probably on a microscopic level. I am 29 years old.

The site where the melanoma was excised (twice) itches like crazy. It used to itch really bad before it was excised. I've noticed it in the last few weeks it has started to feel as it did right before I had the melanoma excised. I know scar tissue can take some time for the body to adjust to; however, this is the same feeling as when I had the primary and it is a very distinct feeling.

Does anyone have any experience with the itching symptom of melanoma? Did it later turn into a recurrence?

Thanks,

Teej

Teej

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Anonymous's picture
Replies 4
Last reply 4/16/2015 - 3:30pm
Replies by: Janner, Eric, looptwelve

Hi everyone, 

Recently I was dignosed with melanoma in situ on my right side of back. Had the surgery and margins are all clear. 

Reading my patology report, clinical diagnosis " Atypical Melanocytic Nevous" 

i am not sure what that mens?  My doctor told me its in Situ, very early stage. 

I will ask about that during my next check up. 

I am 33 old white male. 

Thank you. 

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arthurjedi007's picture
Replies 14
Last reply 4/19/2015 - 3:19pm

I have my next scan Monday and my doc is already thinking I should be on his ERK trial. Zelboraf and the taf/mek combo both failed me wih zelboraf having really poor quality of life side affects while I was on the med. So I'm very Leary of these targeted therapies for me. If they had shrank even one tumor I might be less skeptical but they didn't. Yervoy didn't shrink anything either. Only keytruda has done that. So for me at least I don't see how this ERK will be any different. It just targets a gene further up the same chain. Granted I'm glad they have something.

They did say they have had 2 people have partial remission so it does help some people. So am I being stupid to not do this or is there something better for me?

For about 4 weeks I've been feeling great and my LDH has continued to drop to 301. Way better than 840 in January. I can walk non stop for 30 minutes again. Sure I have issues and pains and tire out fairly quickly but nothing like a few months ago before the ton of radiation which I think I've fully recovered from.

I think TIL is a good option since Im strong enough now but I doubt if the scan will show any non radiated tumor they can harvest but it might. They wouldn't do the harvest and store it for later at Bethesda at least not for me when I asked.

i also think pd1 combined with some other med like maybe antilag3 might be good for me. The plan was after this scan if needed to go to dr Gajewski in Chicago to see what he thinks is best for me since he has that trial.

Otherwise I'm not seeing other options for me. Most I'm excluded because I've done standard treatments. Some like the awesome virus treatment in Utah I'm excluded because I have bone metastasis.

So I'm very frustrated about not seeing good options and very worried especially since the nurse called me about this ERK thing today. Same trial they said at my last scan in november. I'm still hoping though the scan Monday shows no new stuff and everything shrinking or staying the same. That would be a first for me and I would stay on keytruda and thank God for such a miracle.

Sorry to bother everyone. I guess the scanxiety is really getting to me especially after that call from the nurse today about ERK.

Artie

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